Author Topic: Journal for Left Ankle Denovo Surgery on Jan 14, 2015  (Read 32286 times)

Offline BLT

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #60 on: March 28, 2016, 11:48:57 AM »
It's been almost a week since I saw Dr. Ferkel, and now my ankle is starting to feel some minor inflammation. I guess things were going too well for the time being, but I'm not terribly alarmed. This is likely the swelling that he mentioned that was found in the MRI. I still don't have the catching pain that had prior to surgery. When I am sitting I can feel my left ankle is slightly warmer than the right ankle. After hearing about another forum member's over growth of the denovo, I can't rule out any complications that might occur even though I've been having awesome results relatively speaking.

Offline Kerri

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #61 on: March 31, 2016, 10:44:38 AM »
Hi BLT & All -   I am actually on a plane right now from NYC to LAX, and have an appointment this afternoon with Dr. Ferkel.   You know that phrase "lawyer up"?  Well, I decided to "doctor up"!

Seriously, I got two completely conflicting opinions (about what to do with my lesion - not about the fact I have bilateral OCD) at HSS in NYC from Drakos and Kennedy (and neither of those opinions match what my original doctor recommended).    So, since I'm lucky enough to be able to afford it and have the time, I decided to get an opinion from Dr. Ferkel.

So far here's what I have.

1.  Drakos - clean out the divot, put in a small piece of bone from my hip (I have a deep OCD), do NOT micro fracture, fill in the divot with a mix of BMAC and bio cartilage.   The theory is to grow hyline cartilage instead of fibro cartilage.  When I asked what he would do if he got in and discovered the lesion was bigger than it appeared on the MRI, or more on the shoulder (uncontained), he said he'd still repair it this way.

He does this because he says MF has an 85-90% success rate in the first 1-2 years, but then it drops to 50% at 5 years.  He defines success as people who think they are better than before the surgery.   However, he was talking about me getting back to running (which I can actually live without, but if in theory I could run, then it seems to me the other activities I want to do would not be nearly as taxing).

2.  Kennedy - He believes I need to go straight to OATS (the allograft kind) because of the size/placement of my lesion.  He cited same statistics as Drakos re MF, but didnt offer me the option of bio cartilage + BMAC without MF.    (I'm seeing him again next week and plan to ask.)   He defines success as me running again and thinks this has a 90% chance of success.  Every other doctor I've seen seems to cringe at the thought of me going straight to OATS and I've been encouraged not to underestimate the potential complications of doing the more invasive procedure.

3.  My original Lennox Hill doctor would do transitional MF + bio cartilage but would mix the bio cartilage with PRP instead of BMAC.   He said that was the FDA approved method of using bio cartilage and he didn't want to chance growing things other than intended (or more than intended) with stem cells.    I've already decided that as much as I love that doctor, I need someone that does this very regularly.  So right now HSS doctors are my plan.

I am really hoping that Ferkel can shed light on the difference of opinions.

Have a nice day!

Offline jnj15

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #62 on: April 01, 2016, 11:02:55 PM »
Wow to your credit, you are really doing your research--please keep us posted!

Offline Kerri

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #63 on: April 03, 2016, 02:41:45 AM »
Well, so far two things have become clear:

1.  Except for one doctor, there is a strong consensus that OATS is overkill for my lesion today.  I have been advised by everyone else not to underestimate the potential complications and significant additional recovery needs -- and that those added risks outweigh the benefits in my particular case.  So a "repair" procedure it is.

2.  There are a ton of variations on repair procedures, and each doctor has his/her favorite because its either been the most successful for them or its part of the research they are doing.   So now wading through the variations to make a decision will still take some work!

Offline BLT

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #64 on: April 04, 2016, 12:13:49 PM »
Kerri - when do you have your consultation with Dr. Ferkel?

Just a quick update on the inflammation I complained about not too long ago. It seems to have went away. Thank goodness!

Offline Kerri

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #65 on: April 06, 2016, 09:04:04 AM »
Hi BLT - glad to hear that!

I saw Dr. Ferkel last Thursday.   The big take-away for me from that (as well as from seeing an HSS doctor earlier last week) was that I shouldn't start with OATS.   A couple of people have told me now (and this makes sense) that each doctor tends to recommend the thing they happen to do the most, and feel successful with.   However, in my case the consensus view is that OATS would be too aggressive as a place to start. 

Unfortunately by the time I actually saw Dr. Ferkel (it was 4:15 from a 2:15 appointment time), I was really tired (I had left NYC at 4am that same day), and so I didn't do a great job of digging into questions about the actual repair procedure he wanted to do with me.    I basically understand it was some form of MF/lighter drilling, with the possibility of juvenile cartilage (interestingly he never called it de novo, and further research has told me the general term seems to be PJCAT for particulated juvenile cartilage...something transfer).    He did invite me to ask follow up questions after the appointment, so I have sent some by email and hope to hear back from him or his Fellow (Dr. Ni, who I also really liked) shortly.

Where this puts me:  I'm now just trying to figure out which repair procedure and by whom.  So far the HSS docs all use bio cartilage and say they have stopped using the de novo stuff.   I am told its because its harder to work with (as well as more expensive).    Ferkel couldn't comment on the difference because he said he had never used bio cartilage.

I am now on my way to Baltimore for an appointment today with Dr. Schon.  At that point, plus the follow up questions with Ferkel, I think I'll have all the info I am going to reasonably get / need to try to make a decision.

After my appointment with Dr. Ferkel I spent the weekend with my Dad in Palm Springs.  And, of course, since part of my brain still asks whether I can't just live with this instead of having surgery, I went for 3 hikes of approx 2 hours each over 3 days.   I was able to do them, but not at my normal level of confidence and comfort (these are hikes I've been on before), and when I got back to NYC on Monday I was in a ton of pain.  For me, the pain is often a day after the activity - not during the activity.   So as frightened as I am by surgery, I think its time.

How are you doing?

Kerri

Offline BLT

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #66 on: April 07, 2016, 01:47:33 AM »
So far so good. I went to the gym yesterday to do my usual weight routine and I felt great today! Again, I'm not doing anything crazy like running miles on a treadmill. I wish I could comment on hiking, but it's not really a favorite activity of mine :-)

I can understand your situation about pain the day after an activity. That's exactly the same problem I had. I remember once I ran in the morning, and then that same night I took a red eye flight into Philly. I was in constant pain throughout my time in Philly!!! A few months before my surgery I started taking indomethacin every other day to keep the pain in check. I just couldn't live like that anymore.

Offline BLT

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #67 on: June 11, 2016, 05:48:55 PM »
I just realized it's been a while since I've posted in my own created thread. The last few months have more or less been kind of the same. Two days ago I had some unexpected pain in the Achilles area, but it's gone today. My OS always keeps saying discomfort will randomly come and go. Things sometimes won't be linear, but for the most part it will be.

But to focus on the big picture, it's been a blessing. Except for the rare off days like described above, I go to the gym when I feel like. I wake up the next morning with no pain. I'm feeling stronger and more confident about the ankle. I can still feel the minor swelling from what my OS saw on the MRI, but it doesn't interfere with me day to day. When I'm sitting down at a desk working, I can feel the swelling, but still not noticeable when I'm focused. It's also not noticeable when I'm walking.

At this point, not sure what to say...it has been more or less the same and much better than pre-surgery. I encourage anyone to contact me if there is any question or concerns you have with surgery. I can explain the experience from a patient's point of view, so that you can make the most informed decision possible.

I am very thankful for this forum. The stories I've read encouraged me to fight through this.

Offline Kerri

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #68 on: June 11, 2016, 11:00:16 PM »
Hey B - so glad to hear things are generally continuing in such a positive direction!  That's great.   I'm now just over 2 weeks post op.   Out of the mummy cast and into a boot, with another 4 weeks of total NWB.   I was amazed when they took the mummy cast off how good my ankle looked.  Sure there were two holes and it was black and blue, but overall really not bad at all.   I'm starting PT tomorrow for ROM, and still keeping it elevated as much as possible since I'm getting swelling and throbbing if I get too excited about having a knee walker.  Kerri

Offline BLT

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #69 on: July 21, 2016, 11:58:17 AM »
I just finished up an appointment with Dr. Ferkel. This will probably be my very last one, and will return only as needed. He'll continue take MRIs of my ankle to show evidence of the efficacy of Denovo procedure.

My ankle is more or less the same as when I last saw him in March. Denovo has, up to today, worked well for me. It's given me back the lifestyle that naturally suits me. I walk about each day, 95% of the time, never even thinking about my ankle. I'm at a loss for words now...but I'll keep checking up regularly on this forum to let you all know how I am years beyond the surgery.

As always feel free to send me a message!

Offline Kerri

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #70 on: July 24, 2016, 03:37:45 PM »
Brian - that is awesome to hear!!!   Mazel Tov!

Offline ocdnetadmin

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #71 on: August 04, 2016, 02:39:13 AM »
Goddamn I am envious (and proud and happy) for you BLT. I have been busy and haven't read these forums, but you guys are doing some amazing research. Thank you for sharing this with us. especially you Kerri.  You have got me thinking again about doing another surgery.

Please keep us posted. Kerri, how is your recovery going?

BLT, are you able to jump or run? congrats on your walking without thinking again.

Offline BLT

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #72 on: August 05, 2016, 12:41:01 AM »
I don't jump or run. Dr. Ferkel doesn't recommend it, but I think he's telling me to proceed cautiously. I will occasionally run if I am in a hurry, or jump when needed, but I rarely do both. My lifestyle simply doesn't need to do these things often, so it really doesn't bother me.

I couldn't say for sure if I could or could not for the long term, but I definitely feel like I can.

Offline BLT

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #73 on: December 28, 2016, 01:45:42 PM »
It's been a while, so I wanted to stop by again before the year end.

Things have more or less been the same. So that's good news.

Swelling occasionally happens on days where I walk longer than usual.

If I change shoes, the transition of wearing orthotics on those new shoes take some time to adjust, which in turn causes more swelling to my foot at night and early mornings. It does cause me to limp, but after walking for less than a minute the pain subsides. This is most likely due to my flat foot problem. So if you have surgery but also have flat feet, then expect this to happen. The best way to avoid this is to stick to the same brand and model of shoes.


Offline casper1955

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Re: Journal for Left Ankle Denovo Surgery on Jan 14, 2015
« Reply #74 on: January 04, 2017, 11:02:34 PM »
Glad to hear you are doing so well BLT

It has been awhile since I last posted.  A quick update

it is 22 months since surgery.  I was pretty much pain free up until about two months ago.  The pain I did have before that was usually at night.  I sleep on my stomach.  I found if I let my feet hang over the end of the bed there is not as much pressure on the ankle and therefore less pain.  For the last couple of months I have been having some intense periods of pain in the ankle and top of the foot.  I am not sure but it might be related to the cold weather.  It also hurts going down stairs so I walk sideways down the stair keeping the right leg constantly straight.  It was right ankle that was repaired.

I have not run or jumped in over two years.   I do walk about three miles a day in the warm weather and in the cold weather about 40 minutes three days a week on the treadmill, stair stepper swim and bike.  I alternate so as to use different muscles and do not constantly put strain on the same joints.

I feel pretty fortunate that I have done so well and wish you all good luck with this injury.  Hopefully if I ever need surgery again they will have discovered a fix that lasts

I have no plans on going back to see the surgeon unless I get to the point were I am limping all the time.